Shifting From Tokenism to Meaningful Adolescent Participation in Research for Obesity Prevention: A Systematic Scoping Review

Abstract

Background: Traditionally, adolescent participation in research has been tokenistic. Adolescents are rarely afforded the opportunity to influence decision-making in research designed to prevent obesity. Engaging adolescents in meaningful decision-making may enhance research translation. This review aimed to analyze the current modes and nature of adolescent participation in obesity prevention research decision-making.Methods: A systematic scoping review was conducted using Arksey and O'Malley's six-stage framework. Six major databases were searched for peer-reviewed primary research studies with adolescent participation related to obesity, physical activity, and diet. Modes of adolescent participation were categorized based on the Lansdown-UNICEF conceptual framework for measuring outcomes of adolescent participation. The framework outlines three modes of meaningful participation: (i) consultative, which involves taking opinions and needs into consideration; (ii) collaborative, where adolescents are partners in the decision-making process; and (iii) adolescent-led participation where adolescents have the capacity to influence the process and outcomes. The degree of involvement in research cycles was classified based on the National Health and Medical Research Council consumer engagement framework. Five stages of the research cycle were determined: identify, design and develop, conduct, analyze and disseminate.Results: In total, 126 papers describing 71 unique studies were identified. Of these, 69% (49/71) took place in the USA, and 85% (52/61) were conducted in minority or underserved communities, while males were more likely to be under-represented. In 49% (35/71) of studies, participation was consultative and 9% (6/71) of studies involved an adolescent-led approach. Furthermore, 87% (62/71) of studies incorporated adolescent participation in one or more of the research cycle's formative phases, which involve eliciting views, opinions and idea generation. Only 11% of studies engaged adolescents in all five stages of the research cycle where adolescents could have more influence over the research process.Conclusion: Meaningful adolescent participation in the obesity prevention research cycle is limited. Empowering and mobilizing equal partnership with adolescents should be at the forefront of all adolescent-related obesity prevention research.

How are adolescents engaged in obesity and chronic disease prevention policy and guideline development? A scoping review

“…A consultative capacity was the primary mode of participation, while no policy or guideline documents assessed within this review engaged adolescents in an adolescent-led approach. This is consistent with findings from adolescent engagement in health research literature [ 66 ].…”

The social origins of obesity within and across generations

“…Another strategy to improve the social environment is to use participatory action research 143 . This is a “bottom‐up” strategy where researchers and participants jointly seek to understand history, culture, and local contexts to shape new action‐oriented research on how to improve obesity prevention outcomes 144 . This could also be tailored more to subgroups of individuals where social adversity is likely to play a greater part than for other subgroups, where other exposures than social adversities may be more harmful.…”

Ethical considerations in engaging young people in European obesity prevention research: The CO‐CREATE experience

“…Ethics committees may consider providing more concrete guidance to researchers regarding ethical issues arising in interactions and relationships between researchers and young people 12 . Designing with the young people ethical principles and frameworks for securing basic protection and consent may also be considered 12,18,20,42 …”

“…16,17 Engaging young people in research can be practiced in various ways. 18 Engagement can be limited to consulting young people at a specific point in time by asking for their opinion on predetermined issues and using their feedback to inform the research. Ideally, engagement implies more participatory approaches, and young people are offered the possibility to share decisions with researchers or policymakers.…”